Nearly one in 10 Americans has diabetes. But because of rising insulin prices many of them struggle to afford the drugs they need and some diabetics ration their dosage.

This episode of Moving Upstream examines how diabetics like Karyn Wofford, a 29-year-old freelance writer from Jackson, Ga., are finding unconventional ways to get their insulin. She trades diabetes medications with online friends on Facebook and Twitter , and she once created a GoFundMe page where she asked strangers to help pay for her medication.

In the video above, WSJ’s Jason Bellini also meets a group of everyday citizens who are trying to push back against rising insulin prices by producing their own formula of the drug.

More than 400,000 individuals have signed the ADA’s Make Insulin Affordable petition, as the ADA marks second anniversary of the initiative.

ARLINGTON, Va. (November 16, 2018) — On the second anniversary of the Make Insulin Affordable initiative, the American Diabetes Association® (ADA) announces that more than 400,000 Diabetes Advocates have joined the call for affordable insulin for all who need it—the largest response to an ADA call to action to date. After its examination of the insulin supply chain, ADA and its Insulin Access and Affordability Working Group (Working Group) published recommendations and public policy solutions to address the problem. The ADA reaffirms its commitment to implementing these solutions and achieving affordable insulin for all who need it.

418,220 people have signed the petition. Their voices have been heard. Diabetes Advocates called for Congressional hearings to investigate the reasons for the dramatic increases in insulin costs. The U.S. Senate Special Committee on Aging answered with a hearing in May of this year. Chief Scientific, Medical, and Mission Officer William T. Cefalu, MD, testified about the impact of the high costs on individuals with diabetes.

Diabetes Advocates called for Congress to take action to ensure all people who need insulin have affordable access. The Congressional Diabetes Caucus answered by releasing a list of policy recommendations they intend to pursue. Many of the Caucus’ recommendations align closely with ADA’s own proposals.

“There is no substitute for insulin, and access to insulin is a matter of life and death for more than 7.5 million Americans with type 1 and type 2 diabetes. Too many are faced with the unacceptable choice of either rationing or forgoing insulin doses to reduce out-of-pocket costs, despite the serious and potential deadly complications of improper insulin dosing,” said Dr. Cefalu. “We are grateful for the continued collaboration of Congressional leaders to help us address this critical problem, including Senate Diabetes Caucus Co-Chairs Susan Collins and Jeanne Shaheen, and Congressional Diabetes Caucus Co-Chairs Diana DeGette and Tom Reed. Long-term solutions to this problem are our shared priority.”

Since the launch of ADA’s campaign, increased pressure from Diabetes Advocates has had a tangible impact for people with diabetes. States have passed legislation to require drug coverage to be more patient friendly. More discounts negotiated in the insulin supply chain will be shared with people with diabetes. These milestones are important, but our work will not be complete until individuals with diabetes see relief at the pharmacy counter.

The average price of insulin nearly tripled between 2002 and 2013[1]. The rising cost of and access to insulin ultimately impacts everyone and especially people with diabetes and their families, health care providers, insurers, employers and our national health care system. Current estimates project that diabetes was the most expensive chronic illness in the U.S. in 2017, at a total of more than $327 billion per year including $15 billion for insulin[2].

The ADA’s Make Insulin Affordable website (makeinsulinaffordable.org) includes information and resources for people who are struggling to pay for insulin, including new patient assistance programs recently launched by the insulin manufacturers as well as private assistance programs. The site also includes important links to information about the health insurance marketplaces and how to become a Diabetes Advocate.

“Perverse” incentives in the insulin supply chain lead to artificially high prices, as well as limited competition in the markets, according to a bipartisan report released Thursday by two lawmakers.

The report from Reps. Diana DeGette (D-Colo.) and Tom Reed (R-N.Y.), co-chairs of the Congressional Diabetes Caucus, took more than a year to complete and concluded that several factors drive insulin prices up, while forces that would typically drive prices down are “blunted.”

“Many cannot live without it, but countless patients struggle to afford it,” DeGette and Reed said in a statement.

“As their out-of-pocket costs continue to rise, the current system is unfairly putting insulin out of reach – placing millions of lives at risk.”

Insulin in the United States isn’t free — in fact, it’s remarkably expensive, with some of today’s newest varieties costing over $500 for a box of five pens, according to GoodRx.

And its cost is still rising.

List prices of insulin have nearly tripled from 2002 to 2013, according to a report from a working group at the American Diabetes Association.

Some patients are also reportedly rationing their insulin because taking too little is better than having none to take at all. The result is people with diabetes living with dangerously high blood glucose levels, putting their health and even their lives in danger.

But the questions of who is to blame for skyrocketing prices and what can be done about it don’t have simple answers.

https://makeinsulinaffordable.org/wp-content/uploads/logo_combo_v2.png00Erica Mitchellhttps://makeinsulinaffordable.org/wp-content/uploads/logo_combo_v2.pngErica Mitchell2018-10-02 14:32:152018-12-11 14:34:49HEALTHLINE: Why Is the Cost of Insulin Rising and What Can People Do About It?

Liz Parlett Butcher opened her mailbox earlier this week to find a letter she never thought she’d lay eyes on.

UnitedHealthcare, which manages the family’s Medicaid plan, wrote to say that Butcher’s 10-year-old son Shane was approved for his current brands of insulin for the next 20 years.

Insurance companies commonly switch up which brand of medication is considered their preferred option. Before the plan will pay for a more expensive brand, patients must prove the lower-cost option doesn’t work for them.

A July story in the Philadelphia Inquirer chronicled the Butchers’ experience with this system — which included a scary episode of dangerously low blood sugar levels when Shane, who has type 1 diabetes, was switched to a different brand of long-acting insulin.

26-year-old Alec Smith couldn’t afford the $1,300 a month insulin he needed to control his diabetes, so he tried rationing it — and died. His mother is now speaking out, telling NBC News she lost her son “because of pharmaceutical greed.”

The price of insulin has skyrocketed, and what some diabetics do to get the medicine they need is simply heartbreaking and awful.

“This is not something that’s negotiable. It’s not something I’m using for fun. It’s not something I can choose whether or not to use, I have to use it. It is imperative to my life. If I don’t have it, I die. I don’t,”

Hattie Saltzman is 22 years old. She was diagnosed with Type 1 diabetes while she was in high school. She is vocal about how she survived last year when her copay jumped to $550.

https://makeinsulinaffordable.org/wp-content/uploads/logo_combo_v2.png00Erica Mitchellhttps://makeinsulinaffordable.org/wp-content/uploads/logo_combo_v2.pngErica Mitchell2018-08-06 14:42:182018-08-14 14:46:50KCTVNEWS5: Kansas City college student describes the copay that almost killed her

The increasing cost of insulin is potentially exposing those with diabetes to serious health consequences, according to an American Diabetes Association statement published in the June issue of Diabetes Care.

Noting that the average list price of insulin nearly tripled between 2002 and 2013, William T. Cefalu, M.D., from the American Diabetes Association in Arlington, Va., and colleagues from the Insulin Access and Affordability Working Group discuss the affordability of insulin for people with diabetes. Individuals with diabetes may be forced to choose between purchasing medications or other necessities, exposing them to serious health consequences.

According to the statement, providers, pharmacies, and health plans should discuss the cost of insulin preparations with diabetes patients to help them understand the financial implications of the preparations. The lowest-priced insulin required to effectively and safely achieve treatment goals should be prescribed; in appropriately selected patients, this may include human insulin. Uninsured patients should have access to high-quality, low-cost insulin; for insured people, cost-sharing should be based on the lowest price available. Health plans should ensure that patients with diabetes can access insulin without undue administrative burden or excessive cost.